Hydrodistention Conference In Houston

[Bessie]

I went to the conference in Houston yesterday and it was very informative. They did a study with 50 women who had no symptoms of IC and performed a hydrodistention on them. They found that 70% of the women showed the
petechial hemorrhages, glomerulations, etc. That is very interesting. It makes me wonder if doing the hydrodistention can cause more problems?

The conference had some great speakers but my favorite was Dr. Brookoff from Denver. If I lived close enough he would be my doctor. He seems like the most compassionate man. He is like House with a sense of humor

I am hoping to have more conferences in this area soon.

[ICNDonna]

An IC diagnosis is made based on several things --- symptoms, ruling out other possibilities that might be responsible for the symptoms, sometimes a potassium sensitivity test, and sometimes a hydrodistention with biopsies. The hydro isn't the single test to diagnose.

Donna

[Bessie]

I got diagnosed with the hydrodistention but I thought it was very interesting that they did a study on women who were going in for other surgeries, tests, etc. and when they did the hydrodistention they saw the petechial hemorrhages with 70% of the women. I was just curious if the test is what caused the bleeding? Any thoughts??

[GriffsMommy]

Honestly I think like with so many other things doctors just don't know. I have heard that a lot of doctors now are using just the PST to dx IC but my uro thinks that it isn't sure fire because some people who don't have IC will respond to the PST and some people w/ IC won't respond to the PST. He thought that the hydro was considered the "gold standard" but he even admitted that it's not full proof either and he said that some people w/ IC will look normal during the hydro (I did, I didn't have any of the pin point bleeding at all, he only dx me once he saw all the mast cells in my biopsy) and obviously from this study some people who don't have IC will look like they do. As Donna said obviously they go on symptoms as well, I gave my uro a couple of days worth of voiding diaries, several days w/ just times and 24 hours w/ times and amount. I think it was all the pieces coming together.

[Bessie]

I agree with you. IC is so different in everyone. I guess that is why it is so difficult to treat in some and easier with others. I just hope that some day soon they will find a cure and we won't have to suffer any longer.
Take care

[Sarojini]

Many docs now think that IC might be a cluster of different disease states... meaning in different people, different things are triggering the bladder symptoms... and since we don't know what those "things" are, we are just throwing everything but the kitchen sink at each and everyone. It's possible someday we'll know exactly what causes everything, and can tailor the treatment to the person. That'd be good

I agree with you about Dr. Brookoff too. Great guy. I lived in Memphis, which is where he was before Denver, but he was just leaving when I was diagnosed with IC, so I never got to see him. I did, however, have a wonderful, compassionate urologist who took care of my every need at the time.... Now, though, I'd trade my own pain doc for Dr. Brookoff any day

[jen74]

When I first started having IC symptoms last May, I had a urogyne who wanted to do a hydro on me. I went home and researched it well and also talked to my gyne about it and also my GI doc(he is the smartest guy). My gyne told me that they did do alot of studies with the hydro on people with and without IC. She told me back then that alot of the people without IC had a positive hydrodistention. SO yes, when they stretch your bladder beyond it's normal ability to stretch, you have a high chance to have bleeding or to have an irritated baldder lining show up and this is in the normal person without IC.
I do know alot of people get relief from the hydro. I had a long discussion with my gastroenterologist about the hydro. He knew more about the test than some uro docs I have talked to( pretty sad huh?)
He said that what they hope is that by doing a hydro it will interfere with the nerves and you will get less pain. But what they dont tell you is, if your nerves are very hypersensitive(mine are), you can have just as much chance that after they stretch your bladder, your nerves will fire like crazy instead of calming down and cause you even more pain!!
This test is different with everyone. I think you have to go with your gut instinct when deciding whether or not to do the hydro. You know your body better than anyone. I just think that these uro docs need to be more upfront and honest about this test and how it does have as many bad outcomes as it does positive ones with patients. They need to tell you what can go wrong. They really also need to get to know a patient and their make up better before putting them through this test. My GI doc knows me very well and all the health issues I have. He said he agreed that I should not do the hydro as it would likely send me through the roof as far as pain in concerned. He knows I have a lot of neuralgia pain as it is and that my pain signals are out of whack and fire needlessly as it is.
For some people the hydro is great and for others it can be a nightmare.
Jen

[mich2604]

I went to a Kidney specialist last year and he belived that the Hydro causes the bladder to bleed. He said when you fill up a bladder like that it is going to bleed like the pics you have here.

It seems each dr had their own opinions.

I bled pretty bad after my hydro, and the one dr said it was due to my lyme disease that my bladder bled so badly.

One day I hope they have a blood test or urine test for IC.